First "Weekly" Echo with Dr. Shanti (6/2/09)

We went to the first of our weekly fetal echos with Dr. Shanti today. Our main hope for these appts is that she remain stable and that we see no sign of fluid building anywhere (which she didn't). She did not see any major changes today (HR was at 51 and we got excited, but she said it isn't significant and means the same as 47).  She did mention that the wall around the ventricle is getting thicker which indicates that the single ventricle is doing a lot of work (which is not a great sign.) Ugh.

Dr. Shanti is trying to get us scheduled in Madison for a more thorough examine of her arrhythmia this week or next and we are hoping to get scheduled with Dr. Rios this week or next for an official 2nd opinion (Fetal Echo).

I also have a friend that I met through ECFE who does PR for an Association for Cardiologists. She sent the president an email regarding our situation and he said he would have someone from his group look at her file (he is at Rush in Chicago). He also highly recommended Dr. Charles Kleinman from Columbia which is so interesting bc he is Dr. Shanti's mentor and has already reviewed/consulted our her file. We are sending our info today to Children's Hosp in Boston where they will also take a look at her file.

I can't help but feel a bit discouraged bc of the bit of information regarding the ventrical wall thickening but Dan reminded me that this is what these appts are for and that we have to continue to stay positive and remember that every week that she continues to stay stable is a small victory :)


Love,
Alli, Dan & Jack

ps-Thank you, Nana for watching Jack today. He loved it (and cried when you left which I thought was very sweet!)